Hi, I have had TMJD for about 4 years now, It has got worse and worse, I have found no relief and I really do not know where/who to go next.
Here is my story, It is kind of a read.
It all started about ~4 years ago after a dentist app. to fill a few cavities. After about 2 weeks I started to have a high pitched ringing in my right ear (did not connect the two at the time), that seemed to be very sensitive to high frequency sounds, such as computers, TV's, light fixtures, anything with certain types of power supplies.
It got progressively worse over the next few months to where it was sensitive enough I had to move my computer tower out of my room, trash the old tv and monitor, use a loud fan to sleep at night, be careful of loud sounds, as they caused pain.
Then the ear pain, pressure, draining feeling started, I saw an ent, no ear infection, problems. Had a CAT scan of my sinuses, no infections, problems. Later the numbness and pain kicked in on the right side, I had an MRI scan done, nothing. The ent said I had tinnitus, and would have to live with it. Both those scans were $6000 total.
I had been taking topamax for 2 years due to what was thought to be migraine headaches(know different now), neurologist said my problems were my "migraines" getting worse and increased my dose of topamax, all that did was made ringing worse. I eventually cut the topamax as it was aggravating the tinnitus.
When my jaw started to hurt when opened, after chewing something, a search led my to TMJD. Every single symptom matched perfect (about 20), I was very happy my search of 3 years was over, that was until I read the rest.
I saw my dentist who checked me out, gave me a xray of the joints (xray was done in his office) and verified I had TMD. He said my main problem was inflammation putting pressure on the surrounding areas, including the middle ear, along with a misaligned lower jaw, and night clenching. I paid $400 for the xray another $100 for a NTI device, along with a rx for a NSAID (lodine xl 400) and was told to come back in two weeks to see "how things were going" He seemed to know what he was talking about.
The device helped a little with the pain, so I then was given a upper bite plate that was $600, with followup visits for adjustment, he said the device was to help realign the jaw and cut down on clenching. The thing never did anything except to provide a surface to clench on, still putting pressure on the joints. After six months of wearing it(24hr) the pain and ringing were still there, however my bottom jaw had moved slightly to the left, thus changing my bite. When I took it off the only teeth that were touching were two sharp points on my back molars, so the dentist adjusted the teeth to try to correct the bite, thats when everything went to hell, I was now having pain in my left jaw, along with bad headaches, congestion of my sinuses, ringing worse than ever in both ears, and without the bite plate still only two sharp points on my upper molars are touching the bottoms, just further in the front.
I will for sure never be going back to that dentist, For now I am stuck using the NTI as it is the only way I can sleep and keep the pain down.
Including everything, I have now wasted about $8000 and have got nowhere.
Where to go next is the question, an orthodontist gave me a referral to a place 100mi away that is a specialist in
Craniomandibular Dysfunction? and another office that has some kind of "special" CT scan for TM joints 80mi away.
I have also heard about neuromuscular dentistry, found a few in my state (michigan) but don't know anything about them.
Thanks for reading, I hope someone who has gone through all this hell longer than I have can point me to the right direction/doctor.
send me a pm--i think i can point you in the right direction---i went to the best oral surgeon in michigan for my surgery and he wont do surgery unless its necessary----I can give you recomendations for many doctors in your area---just send me a pm and we can talk---im here anytime you need me.
I noticed this was posted in 2008, how are you now? Your story sounds just like mine and I've made an appt with a massage therapist to try cranial release therapy.
Let me know if you've found pain relief.